Rare narcolepsy and hypersomnias

French national reference center for rare narcolepsy and hypersomnias

Logo CRMR Narcolepsie Hotel Dieudrapeau françaisThe Sleep and Vigilance Center (SVC) of the Hôtel-Dieu hospital in Paris is a department of the Assistance Publique-Hôpitaux de Paris (AP-HP). It is part of the Paris Centre University Hospital Group: Cochin, Hôtel-Dieu, Broca, Pôle médical de l’Hôtel-Dieu, and it is a university center of the Faculty of Medicine of the Paris Descartes University. The center has been labelled as a reference center for rare narcolepsy and hypersomnias since October 2005.

The medical team is multidisciplinary : neurophysiologists, neurologists, pneumologists, psychiatrists, general practitioners, occupational physicians, sports physicians. It is coordinated by the head of the department, Pr Damien Léger. The paramedical team is directed by Maxime Elbaz, health executive. The person in charge of the reference center since its creation is Caroline Gauriau.

Logo je dors trop CRMR Narcolepsie Hôtel-DieuThe SVC carries out the assessment and management of sleep disorders in adults using sleep examinations : polysomnographic (PSG) recording, multiple sleep latency test (MSLT), full hospitalisation (PSG + MSLT + ad libitum PSG for the diagnosis of hypersomnias), maintenance of wakefulness test (MWT),actigraphy, ventilatory polygraphy (VP), electroencephalogram (EEG), light therapy.  The center carries out around 2,000 day and night hospitalisations each year and around 8,000 consultations. The center has been accredited since 1996 by the French Society for Sleep Research and Medicine (SFRMS) on the basis of quality criteria and training of doctors and technicians. This accreditation was renewed in 2018 with the new affiliation to the Hôtel-Dieu center of a pediatric sleep center at Necker directed by Pr Brigitte Fauroux.

The SVC is also a research center of the University of Paris Descartes and includes a host team labelled since 2013 by the University of Paris Descartes: EA 7330 VIFASOM. This host team, coordinated by Pr Damien Léger and Dr Mounir Chennaoui, comprises some twenty researchers, including 6 HDRs and 4 PhD students. The research themes are : epidemiology of sleep and vigilance disorders, sleep-vigilance and public health, effects of sleep deprivation in healthy people, shift work and night work, environment-working conditions-sleep and vigilance. This research unit was re-evaluated very positively during the 2017-2018 evaluation campaign by the High Council for the Evaluation of Research and Higher Education (HCERES). It has thus obtained the possibility to continue its activities for the next 5 years (2019-2023).

With the support of the Caisse Régionale d’Assurance Maladie d’Ile de France (CRAMIF), the SVC of the Hôtel-Dieu hospital has set up since 1997 a consultation on occupational pathology, sleep, vigilance, and psychiatric neurological disorders. Coordinated by Pr Damien Léger, Dr Elisabeth Prévot and Dr Arnaud Metlaine, this consultation is in close collaboration with the occupational and environmental pathology service of the Hôtel-Dieu hospital, directed by Pr Damien Léger. This consultation primarily receives patients referred by occupational physicians with work-related sleep and vigilance disorders. It also receives employees who are victims of work-related suffering. These consultations and examinations are paid for by the CRAMIF and are also supported by the ANSES. The prevention of accidents related to sleepiness is also a priority theme of this consultation.

The SVC of the Hôtel-Dieu is also consulted to give its expertise in the world of work on the organisation of staggered rhythms, accident prevention, education and training for health.Logo brain team

This reference center is affiliated with the BRAIN-TEAM rare diseases healthcare network.

Keywords : Hypersomnia, idiopathic hypersomnia, IH, narcolepsy without cataplexy, narcolepsy-cataplexy, NT1, NT2, sleep, sleepiness, hypersomnia, occupational health.

Medical team

Damien Leger Narcolepsie Hotel Dieu

Pr Damien Léger
MD, PhD

Contact us

Phone. +33 1 42 34 82 43
or         +33 1 42 34 83 82
or         +33 1 42 34 89 89
or         +33 1 42 34 86 51

> Send an email

In case of emergency

Visuel Carte de soins et d'urgence narcolepsie

The reference center for rare narcolepsy and hypersomnias of the Hôtel-Dieu hospital has 4 main missions: a clinical mission, a research mission, a teaching mission and a societal and public health mission.

  • Its clinical mission is to contribute to the detection of rare hypersomnia as soon as possible and to provide quality, appropriate and effective care for patients. In this context, it develops diagnostic and management procedures with the other centers, which it evaluates for optimized management. It participates in therapeutic trials of new treatments.
  • Its research mission is oriented around the topics of the center :
    • Professional consequences of rare hypersomnias. It was notably encouraged in this perspective by the prize of the Rare Disease Foundation.
    • Hypersomnia and accidental risk : Here again, several research projects show the involvement of the center in this topic. In connection with the EA 7330 VIFASOM Paris Descartes led by Pr Léger, the center contributes to a better understanding of the effects of sleep deprivation and possible countermeasures to combat sleepiness.
  • Its teaching mission is carried out within the framework of the University of Paris Descartes where the center animates, in addition to the initial training of medical students, the continuing education of physicians or sleep technicians with a IUD and two UD of teaching on sleep that it animates directly. It also participates in multiple continuing education initiatives throughout the year.
  • Its societal and public health mission is carried out in connection with several professional associations and in particular :
    • The French Society of Sleep Research and Medicine (SFRMS) of which Pr Damien Léger was president until 2019. As vice-president from 2016 to 2018, he already organized the annual sleep congress gathering more than 3,000 congressmen each year (in Lille in 2019).
    • The National Institute of Sleep and Vigilance (INSV), of which Prof. Damien Léger has been president and member of the scientific council since 2000, organizes each year the sleep day which gathers several thousands of participants on several sites in France.
    • The Medical Committee of Road Safety of which Pr Damien Léger has been president since September 2017. There, he is committed to develop prevention actions dealing with drowsiness at the wheel.

Narcolepsy

Narcolepsy is a chronic neurological disease belonging to the group of rare hypersomnias of central origin. Narcolepsy is differentiated into two independent nosological entities: Narcolepsy type 1 (NT1) and Narcolepsy type 2 (NT2).

  • Narcolepsy Type 1 is characterized by irresistible sleep attacks, cataplexy (sudden loss of muscle tone triggered by emotions), and other inconsistent symptoms such as hypnagogic hallucinations, sleep paralysis, and poor nighttime sleep. Its pathophysiology is based on the loss of hypocretin neurons in the hypothalamus, presumably in connection with an autoimmune process. NT1 often begins in the second decade.
  • Narcolepsy Type 2 shares the same clinical symptoms as type 1 narcolepsy but cataplexy is absent and cerebrospinal fluid hypocretin levels are normal.

Idiopathic hypersomnia

Idiopathic hypersomnia is a rare central hypersomnia characterized by excessive daytime sleepiness, more or less permanent, associated with voluntarily long and unrefreshing sleep bouts. Nighttime sleep is of excessive quality and duration, associated with inertia in waking.

Photo Equipe Narcolepsie 2
  • Pr Damien Léger – Occupational physician, head of department and head of the reference center
  • Dr Irina Constantinescu – Neurologist
  • Dr Arnaud Metlaine – General practitioner
  • Dr Alexandre Rouen – Geneticist
  • Dr Jonathan Taieb – General practitioner
  • Dr Gabriela Martins Caetano – Occupational physician
  • Dr Elisabeth Prévot-Balensi – Occupational physician
  • Dr Marie-Françoise Vecchierini– Neuropsychiatrist
  • Dr Olympe Véron – General practitioner
  • Caroline Gauriau – Reference center project manager, Research engineer
  • Maxime Elbaz – Executive engineer

RESEARCH

  • ACTISOM project : Importance of sleep deprivation in the differential diagnosis of primary hypersomnia in rare hypersomnia reference centers (Finalized)
  • SOMNOPRO project : Career path for people with rare hypersomnias (Finalized)
  • NarcoCog project : Narcolepsy and cognition (Finalized)
  • INPES Epidemiological Barometer project : Prevalence of sleep and vigilance disorders and sleep time in France. Sleep time. Sleep debt. Napping (Ongoing)
  • PERCAF project : Epidemiological and polymorphism study: Caffeine sensitivity and sleep deprivation (Finalized)
  • Study MWT evaluation by the Hori method : Re-analysis of arousal tests (Finalized)
  • MORPHEO project : Artificial intelligence analysis of polysomnographies (Finalized)
  • PANDORE project (Ongoing)

EDUCATION

2022

Disturbances in sleep, circadian rhythms and daytime functioning in relation to coronavirus infection and Long-COVID – A multinational ICOSS study.
Ilona Merikanto, Yves Dauvilliers, Frances Chung, Brigitte Holzinger, Luigi De Gennaro, Yun Kwok Wing, Maria Korman, Markku Partinen, 2nd ICOSS members
J Sleep Res, 2022 Aug, PMID: 34964184 DOI: 10.1111/jsr.13542

2021

Sleep, Prospective Memory, and Immune Status among People Living with HIV.
Brice Faraut, Lorenzo Tonetti, Alexandre Malmartel, Sophie Grabar, Jade Ghosn, Jean-Paul Viard, Vincenzo Natale, Damien Léger
Int J Environ Res Public Health, 2021 Jan 8, PMID: 33429860 PMCID: PMC7826879 DOI: 10.3390/ijerph18020438

Impact of sleep on female and male reproductive functions: a systematic review.
Gabriela Caetano, Inès Bozinovic, Charlotte Dupont, Damien Léger, Rachel Lévy, Nathalie Sermondade
Fertil Steril, 2021 Mar, PMID: 33054981 DOI: 10.1016/j.fertnstert.2020.08.1429

Genetic Determinants of Neurobehavioral Responses to Caffeine Administration during Sleep Deprivation: A Randomized, Cross Over Study (NCT03859882).
Mégane Erblang, Fabien Sauvet, Catherine Drogou, Michaël Quiquempoix, Pascal Van Beers, Mathias Guillard, Arnaud Rabat, Aurélie Trignol, Cyprien Bourrilhon, Marie-Claire Erkel, Damien Léger, Claire Thomas, Danielle Gomez-Merino, Mounir Chennaoui
Genes (Basel), 2021 Apr 10, PMID: 33920292 PMCID: PMC8069049 DOI: 10.3390/genes12040555

Probing machine-learning classifiers using noise, bubbles, and reverse correlation.
Etienne Thoret, Thomas Andrillon, Damien Léger, Daniel Pressnitzer
J Neurosci Methods, 2021 Oct 1, PMID: 34320410 DOI: 10.1016/j.jneumeth.2021.109297

Genetics and Cognitive Vulnerability to Sleep Deprivation in Healthy Subjects: Interaction of ADORA2A, TNF-α and COMT Polymorphisms.
Mégane Erblang, Catherine Drogou, Danielle Gomez-Merino, Arnaud Rabat, Mathias Guillard, Pascal Van Beers, Michael Quiquempoix, Anne Boland, Jean François Deleuze, Robert Olaso, Céline Derbois, Maxime Prost, Rodolphe Dorey, Damien Léger, Claire Thomas, Mounir Chennaoui, Fabien Sauvet
Life (Basel), 2021 Oct 19, PMID: 34685481 PMCID: PMC8540997 DOI: 10.3390/life11101110

Sleep and daytime problems during the COVID-19 pandemic and effects of coronavirus infection, confinement and financial suffering: a multinational survey using a harmonised questionnaire.
Markku Partinen, Brigitte Holzinger, Charles M Morin, Colin Espie, Frances Chung, Thomas Penzel, Christian Benedict, Courtney J Bolstad, Jonathan Cedernaes, Rachel Ngan Yin Cha, Yves Dauvilliers, Luigi De Gennaro
BMJ Open, 2021 Dec 13, PMID: 34903540 PMCID: PMC8671846 DOI: 10.1136/bmjopen-2021-050672

Sleep in preadolescents and adolescents with chronic disorders.
Shannon Pierson, Sonia Khirani, Samira Touil, Damien Leger, Alessandro Amaddeo, Lisa Ouss, Brigitte Fauroux
Minerva Pediatr (Torino), 2021 Jul 15, PMID: 34264048 DOI: 10.23736/S2724-5276.21.06492-2

Would we recover better sleep at the end of Covid-19? A relative improvement observed at the population level with the end of the lockdown in France.
Francois Beck, Damien Leger, Sebastien Cortaredona, Pierre Verger, Patrick Peretti-Watel, COCONEL group
Sleep Med, 2021 Feb, PMID: 33422813 PMCID: PMC7722490 DOI: 10.1016/j.sleep.2020.11.029

Maintenance of wakefulness test: how does it predict accident risk in patients with sleep disorders?
Pierre Philip, Kelly Guichard, Mélanie Strauss, Damien Léger, Emilie Pepin, Isabelle Arnulf, Patricia Sagaspe, Lucie Barateau, Régis Lopez, Jacques Taillard, Jean-Arthur Micoulaud-Franchi, Yves Dauvilliers
Sleep Med, 2021 Jan, PMID: 32778442 DOI: 10.1016/j.sleep.2020.04.007

2020

The economic and societal burden of excessive daytime sleepiness in patients with obstructive sleep apnea.
Léger, D ; Stepnowsky, C.
Sleep Med Rev, 2020 Jun, PMID: 32169792 DOI: 10.1016/j.smrv.2020.101275

Environmental open-source data sets and sleep-wake rhythms of populations: an overview.
Leger, D ; Guilleminault, C.
Sleep Med, 2020 May, PMID: 32058233 DOI: 10.1016/j.sleep.2019.12.027

Napping and weekend catchup sleep do not fully compensate for high rates of sleep debt and short sleep at a population level (in a representative nationwide sample of 12,637 adults).
Leger, D ; Richard, JB ; Collin, O ; Sauvet, F ; Faraut, B.
Sleep Med, 2020 May, PMID: 32058233 DOI: 10.1016/j.sleep.2019.12.027

Motorcycling performance and sleepiness during an extended ride on a dynamic simulator: relationship with stress biomarkers.
Bougard, C ; VanBeers, P ; Sauvet, F ; Drogou, C ; Guillard, M ; Dorey, R ; Gomez-Merino, D ; Dauguet, J ; Takillah, S ; Espié, S ; Chennaoui, M ; Léger, D.
Sleep Med, 2020 May, PMID: 32058233 DOI: 10.1016/j.sleep.2019.12.027

Sleep and the GH/IGF-1 axis: Consequences and countermeasures of sleep loss/disorders.
Chennaoui, M ; Léger, D ; Gomez-Merino, D.
Sleep Med Rev, 2020 Feb, PMID: 31778943 DOI: 10.1016/j.smrv.2019.101223

Sleepers Selectively Suppress Informative Inputs during Rapid Eye Movements.
Koroma, M ; Lacaux, C ; Andrillon, T ; Legendre, G ; Léger, D ; Kouider, S
Curr Biol, 2020 Jun 22, PMID: 32413310 DOI: 10.1016/j.cub.2020.04.047

Beneficial effects of exercise training on cognitive performances during total sleep deprivation in healthy subjects.
Sauvet, F ; Arnal, PJ ; Tardo-Dino, PE ; Drogou, C ; Van Beers, P ; Erblang, M ; Guillard, M ; Rabat, A ; Malgoyre, A ; Bourrilhon, C ; Léger, D ; Gomez-Mérino, D ; Chennaoui, M.
Curr Biol, 2020 Jun 22, PMID: 32413310 DOI: 10.1016/j.cub.2020.04.047

Sleep and Prospective Memory: A Retrospective Study in Different Clinical Populations.
Tonetti, L ; Occhionero, M ; Boreggiani, M ; Conca, A ; Dondi, P ; Elbaz, M ; Fabbri, M ; Gauriau, C ; Giupponi, G ; Leger, D ; Martoni, M ; Rafanelli, C ; Roncuzzi, R ; Zoppello, M ; Natale, V.
Int J Environ Res Public Health, 2020 Aug 22, PMID: 32842672 PMCID: PMC7503383 DOI: 10.3390/ijerph17176113

How good is the evidence that light at night can affect human health?
Hicks, D ; Attia, D ; Behar-Cohen, F ; Carré, S ; Enouf, O ; Falcon, J ; Gronfier, C ; Martinsons, C ; Metlaine, A ; Tahkamo, L ; Torriglia, A ; Viénot, F.
Graefes Arch Clin Exp Ophthalmol, 2020 Feb, PMID: 31900646 DOI: 10.1007/s00417-019-04579-6

2019

A study on the optimal length of actigraphic recording in narcolepsy type 1.
Leger, D ; Tonetti, L ; Gauriau, C ; Faraut, B ; Elbaz, M ; Sauvet, F & al
Clin Neurophysiol Pract, 2019 May, PMID: 31211287 PMCID: PMC6562260 DOI: 10.1016/j.cnp.2019.04.004

The Economic Burden of Sleepy Driving.
Léger, D ; Pepin, E ; Caetano, G
Sleep Med Clin, 2019 Dec, PMID: 31640870 DOI: 10.1016/j.jsmc.2019.07.004

The association between physical and mental chronic conditions and napping.
Léger, D ; Torres, MJ ; Bayon, V ; Hercberg, S ; Galan, P ; Chennaoui, M & al
Sci Rep, 2019 Feb 11, PMID: 30741949 PMCID: PMC6370873 DOI: 10.1038/s41598-018-37355-3

Daytime Exposure to Blue-Enriched Light Counters the Effects of Sleep Restriction on Cortisol, Testosterone, Alpha-Amylase and Executive Processes.
Faraut, B ; Andrillon, T ; Drogou, C ; Gauriau, C ; Dubois, A ; Servonnet, A & al
Front Neurosci, 2020 Jan 8, PMID: 31998056 PMCID: PMC6961531 DOI: 10.3389/fnins.2019.01366

Prospective memory in narcolepsy type 1 patients.
Tonetti, L ; Natale, V ; Gauriau, C ; Faraut, B ; Philip, P ; Leger, D
J Psychosom Res, 2019 Feb, PMID: 30665593 DOI: 10.1016/j.jpsychores.2018.12.008

Efficacy of THN102 (a combination of modafinil and flecainide) on vigilance and cognition during 40-hour total sleep deprivation in healthy subjects: Glial connexins as a therapeutic target.
Sauvet, F ; Erblang, M ; Gomez-Merino, D ; Rabat, A ; Guillard, M ; Dubourdieu, D & al
Br J Clin Pharmacol, 2019 Nov, PMID: 31419329 PMCID: PMC6848897 DOI: 10.1111/bcp.14098

Limited Benefit of Sleep Extension on Cognitive Deficits During Total Sleep Deprivation: Illustration With Two Executive Processes.
Rabat, A ; Arnal, PJ ; Monnard, H ; Erblang, M ; Van Beers, P ; Bougard, C & al
Front Neurosci, 2019 Jun 19, PMID: 31275098 PMCID: PMC6594410 DOI: 10.3389/fnins.2019.00591

–  Maintenance of Wakefulness Test, real and simulated driving in patients with narcolepsy/hypersomnia.
Sagaspe, P ; Micoulaud-Franchi, JA ; Coste, O ; Léger, D ; Espié, S ; Davenne, D & al
Sleep Med, 2019 Mar, PMID: 30735912 DOI: 10.1016/j.sleep.2018.02.009

The Impact of Genetic Variations in ADORA2A in the Association between Caffeine Consumption and Sleep.
Erblang, M ; Drogou, C ; Gomez-Merino, D ; Metlaine, A ; Boland, A ; Deleuze, JF & al
Genes (Basel), 2019 Dec 6, PMID: 31817803 PMCID: PMC6947650 DOI: 10.3390/genes10121021

  • Influence des polymorphismes génétiques sur la somnolence et l’attention soutenue avant et après une privation totale de sommeil chez le sujet sain. / Congrès français SFRMS de Lille / Mégane ERBLANG, Catherine DROGOU, Danielle GOMEZ-MERINO, Arnaud RABAT, Mathias GUILLARD, Fabien SAUVET, Mounir CHENNAOUI / Portée nationale, congressistes
  • A highly selective filter of circadian light improves sleep quality and limits the melatonin suppression induced by light at night. / Congrès américain APSS de San Antonio / Damien LEGERMaxime ELBAZ / Portée internationale, congressistes
  • Acute sleep deprivation: consequences on healthy face skin. A non-invasive instrumental investigation. / Congrès américain APSS de San Antonio / Damien LEGER, Caroline GAURIAU / Portée internationale, congressistes
  • Representation of polysomnography recordings as low dimensional trajectories. / Congrès américain APSS de San Antonio / Geoffroy SOLELHAC, Damien LEGER / Portée internationale, congressistes
  • Napping and associated chronic diseases. Survey of 43,060 adults of the nutrinet santé cohort. / Congrès américain APSS de San Antonio / Damien LEGER / Portée internationale, congressistes

2022

Sleep at all costs
Arte | 09.19.2022
Sleep disorders are one of the leading causes of medical consultations in the West, particularly in France and Germany. More and more of us are complaining of insomnia, daytime sleepiness, sleep apnoea and even narcolepsy. The consequences are enormous: millions of work stoppages every year, a loss of several billion dollars for companies, and for 10% of sufferers, serious disorders that end up affecting their entire metabolism: obesity, diabetes, diseases like Alzheimer’s.
In recent years, far from harmful sleeping pills, sophrology, napping and light therapy have become the symbols of the ‘soft’ sleep revolution, and research is being conducted everywhere to better understand sleep and overcome sleep disorders.
> Watch the documentary

2020

Insomnia : what are the alternatives to sleeping pills ?
Le Figaro Santé | 03.13.2020
To mark International Sleep Day, which takes place this Friday, we focus on this problem that affects more than one in ten French people.
> Read more

2018

Sleep disorders: « For many, my illness isn’t really an illness ».
Libération | 09.23.2018
Often neglected, insomnia, hypersomnia and narcolepsy, which affects one in three French people, are the focus of attention at the Sleep and Vigilance center in Paris. And a funny, educational book by Matthew Walker.
> Read more

2017

Sleep: the latest scientific findings
Le Point | 09.28.2017
Sleep is vital for health, concentration, memory and even success. A crucial issue for our times!
> Read more

Sleep disorders : A night in a specialist center to find the root of the problem
20 Minutes | 03.17.2017
REPORTAGE At the Hôtel-Dieu Sleep and Vigilance Center, over 2,000 patients each year undergo tests to find the cause and treatment of their sleep disorders…
> Read more

Heavy sleepers
Doctissimo | 03.16.2017
While for some people 8 hours’ sleep is more than enough, others have a greater need to sleep. « Heavy sleepers » spend an average of more than 10 hours a day in the arms of Morpheus. How can this be explained? What are the risks? We take a look at the situation with Sylvie Royant-Parola and Professor Damien Léger, both sleep specialists.
> Read more

2014

The deleterious effects of waking up at night
Le Figaro Santé | 07.10.2014
Sleeping for eight hours but in a fragmented way is just as tiring as a short four-hour night
> Read more

2012

Five days to get back to sleep
Le Figaro | 03.25.2012
REPORTAGE – In sleep centers, specialists help thousands of people suffering from sometimes serious disorders. The Hôtel-Dieu sleep center in Paris opened its doors to us and subjected us to its tests.
> Read more

Contact information

Hôtel-Dieu
> Sleep and vigilance center

1 Parvis Notre-Dame – Place Jean-Paul II
75004 Paris

> Welcome booklet

At the Hôtel-Dieu, the reference center for rare narcolepsy and hypersomnias in brief …

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patients followed at least once a year*
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medical consultations*
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day hospitalizations*
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fully hospitalized patients*
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authorized therapeutic education program*
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teleconsultation procedures*
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ongoing research projects*
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university courses*
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publications*

* data valid for 2022